Justice Committee on May 3rd, 2016

[Angus Gunn, Counsel, Alliance of People with Disabilities Who Are Supportive of Legal Assisted Dying Society]

Honourable members of Parliament, Mr. Chair, thank you for the opportunity to appear before you this afternoon. Before you is Margaret Birrell, who is president of the alliance. My name is Angus Gunn, and I have served as litigation counsel for the alliance since 2011.

I have been asked to deliver some prepared remarks, and Ms. Birrell will be pleased to respond to any questions the committee might have.

The members of the alliance that I represent are leading advocates for disability rights. The alliance sought and obtained intervenor status at all three levels of court in the Carter litigation to advocate for the right that was ultimately recognized by the Supreme Court of Canada.

In these prepared remarks, the alliance makes four recommendations for suggested amendments to Bill C-14. The first is to restore the efficacy of advanced directives. Bill C-14 does not take up the special joint committee's recommendation that the use of advance requests be permitted. The charter rights of those who suffer from dementia are not less deserving of protection just because their enduring and intolerable suffering results from an illness that also robs them of decision-making capacity.

The government has provided two rationales for excluding advance directives, neither of which we say withstands scrutiny. The first is:

Advance directives generally do not provide reliable evidence of a person’s consent at the time that medical assistance in dying would be provided.

Advance directives do provide highly reliable evidence of a person's consent while the capacity to give consent is intact. Dementia ultimately destroys the capacity to give consent. To insist on such consent at the time of medical assisted dying is to require the impossible. Are there really individuals who decided they would rather die than weather the storm of Alzheimer's for example, but then later change their mind because Alzheimer's isn't so bad after all? Even if these people do exist, why should their vulnerability trump that of the thousands of individuals whose wishes have not changed, but whose illness robs them of the ability to confirm that fact. Why is the blanket ban the Supreme Court of Canada rejected for sufferers of ALS acceptable for sufferers of dementia? Excluding advance directives will cause needless suffering for thousands of Canadians and will condemn us to protracted charter litigation simply to define the perimeter of Carter's cruel choice.

The second rationale offered by the government is that disallowing advance directives guards against the effects of inaccurate assumptions about quality and value of life. The reality of Alzheimer's at late stage is not a matter of assumption. If a competent individual makes an informed decision that at a certain stage of decline the quality and value of life will have degraded to a point where medical assisted dying is desired, why isn't that decision entitled to respect? Who is the state to discard that decision as reflecting inaccurate assumptions? The alliance urges the committee to restore the efficacy of advance directives in relation to medical assisted dying.

The second amendment is to remove the requirement that death be reasonably foreseeable. Bill C-14 rations the availability of medical assisted dying upon an individual's natural death being reasonably foreseeable. Nowhere is that requirement visible in the Carter decision. To the contrary, Kay Carter suffered from the non-life-limiting, non-terminal disease of spinal stenosis.

The government suggests that to permit medical assisted dying for those not approaching natural death could undermine suicide prevention initiatives, could normalize death as a solution to many forms of suffering, or could de-prioritize respect for human life and equality.

These objectives are already well served by other elements of the Carter test, including the need for a grievous and irremediable illness or condition, the need for enduring an intolerable physical or psychological suffering, the requirement that suffering be incapable of relief, the need for a medical or nurse practitioner opinion, and the 15-day waiting period. The controversy over whether Ms. Carter could have won her litigation, but be ineligible under Bill C-14, illustrates the problem with this provision.

Wherever one lands on that debate, Canadian criminal law adheres to the principle of certainty. Prohibited conduct must be fixed and knowable in advance. It offends this principle for conduct to be criminalized, or not, based on a case-by-case application of ambiguous concepts such as “reasonably foreseeable” and “not too remote”. Canadians who experience intolerable suffering, and physicians who wish to assist, should not have to guess about the criminality of their actions based on a retroactive application of concepts with no settled meaning. The alliance urges the committee to remove the requirement that natural death be reasonably foreseeable.

The third reform is that independent recommendations on mature minors and mental illness should be required by statute. At the moment, the preamble to Bill C-14 makes only a non-binding pledge to explore these other situations, but these topics are too important to be left to such an uncertain process. The act, we submit, should mandate a panel of independent experts be asked to make recommendations on these two subjects on a defined and limited deadline.

Finally, the alliance urges that two legislative drafting choices that are visible in Bill C-14 should be amended. First of all, Bill C-14 confusingly uses the word “they” to refer to individuals. An example is subsection 227(1), which says:

227 (1) No medical practitioner or nurse practitioner commits culpable homicide if they provide a person with medical assistance in dying in accordance with section 241 (2).

This use of the singular “they”, aside from being jarring to the eyes and ears, fails to harmonize with the bulk of the Criminal Code, which generally achieves gender neutrality not by using the singular “they”, but rather by using such phrases as “that person”, or “the person”, or “he or she“, or “his or her”. Alternatively the provisions can be reworded altogether to avoid the problem: “No valuable practitioner commits culpable homicide who provides a person with medical assistance in dying.”

Bill C-14 also uses em dashes in several clauses, which make for complicated and lengthy clauses that need to be read multiple times just to be understood. It also inappropriately demotes, as parenthetic asides, language that plays an important role in the bill itself. Clarity and ease of reference would favour the use of lettered subparagraphs instead.

The alliance thanks you again for the opportunity to provide these prepared remarks and to participate in the important work of this committee.

[The Chair, Liberal, Anthony Housefather]

Thank you very much, Mr. Gunn.

Now we will move to the Communication Disabilities Access Canada. Ms. Self, you have the floor.

[Hazel Self, Chair, Board of Directors, Communication Disabilities Access Canada]

Thank you very much.

Good afternoon, ladies and gentlemen. I want to present a rationale and propose two amendments to Bill C-14 to ensure that people with speech and language disabilities are given appropriate communication accommodations and supports in order to provide informed consent in the context of medical assistance in dying.

I am chair of the board of Communication Disabilities Access Canada, which is a national non-profit organization that promotes accessibility and human rights for over 450,000 people in Canada who have speech and language disabilities due to disabilities such as cerebral palsy, autism spectrum disorder, fetal alcohol syndrome, cognitive delay, Down's syndrome, traumatic brain injury, aphasia after a stroke, dementia, ALS, Parkinson's disease, Huntington's disease, and multiple sclerosis.

Bear in mind that with any condition I've just mentioned, the individual could be also suffering from terminal cancer. They may have cerebral palsy but also have cancer.

A person with a communication disability may have speech that is slurred or difficult to understand, or they may have little or no speech and communicate by pointing to letters, symbols, or pictures, or by using a communication device. Some communication disabilities, such as aphasia after a stroke, impact on a person's ability to understand and process what others are saying, but do not affect their cognitive ability to make decisions.

The incidence of speech and language disabilities increases with age and includes people with pre-existing and age-related disabilities, as well as communication challenges related to typical aging, such as hearing and vision loss, reduced comprehension of complex sentences, and word-finding difficulties.

Effective communication is essential for all patients facing end-of-life decisions. Successful communication is a two-way process in which messages are correctly and unambiguously understood by both the patient and the medical practitioner. This includes getting and understanding information about one's diagnosis, prognosis, treatment, and palliative options, weighing up information to reach a decision, and communicating that decision and the reasons for the decision.

These are complex communication issues for anyone and are further compounded for people who have compromised speech and language abilities due to disabilities that affect their ability to understand spoken and written language, retain options and appreciate consequences to options, and to ask questions, give opinions, and communicate a decision. However, with appropriate communication accommodations and supports, many people with speech and language disabilities can make and communicate informed decisions.

There is ample evidence to demonstrate that many people with speech and language disabilities experience significant barriers when interacting with medical practitioners about their health care, and specifically within informed consent situations. Unlike people who are deaf and who may require sign language interpreters, or people who require oral translators, there are currently no protocols or directives in place to ensure that people with speech and language disabilities are provided with appropriate communication accommodations and supports.

People with speech and language disabilities report that health care professionals often overlook and misunderstand their wishes. They are very anxious about the lack of safeguards in Bill C-14. They report that medical practitioners often do not know how to make spoken or written information accessible to them; do not understand what they are communicating when they use ways other than speech to convey their messages; assume their speech and language disability is a cognitive disability; underestimate their capacity to make their own decisions and end-of-life directives; defer to family members and personal support staff to communicate on their behalf; and rely on untrained people to assist with their communication where an arm's-length, mutual, qualified professional communication assistant is required. They also undervalue, typically, the quality of their life and their need for health care interventions.

CDAC is asking for stronger safeguards for people with communication disabilities. These safeguards must include a directive to medical practitioners to engage a communication professional to assess the patient and to provide any required accommodations and supports.

We are proposing the following amendments to C-14 to ensure that people can effectively communicate about medically assisted death. If there is any question about the communication process as identified by the medical practitioner or the patient, then a neutral independent professional with expertise in the patient's communication needs must be engaged in order to assess the required communication accommodations and/or to provide direct communication support. Communication accommodations and supports are required if the patient has challenges understanding information provided to them, retaining and weighing out the consequences of options as part of the decision-making process, and accurately and authentically communicating their decisions. Communication accommodations include picture or letter boards, speech output devices or communication support from a sign language interpreter, deaf-blind intervenor, speech language pathologist, language translator, or cultural interpreter.

Our second directive has to do with the subclause titled “Unable to sign”, regarding proposed subsection 241.2(4),

If the person requesting medical assistance in dying is unable to sign and date the request, another person—who is at least 18 years of age and who understands the nature of the request for medical assistance in dying—may do so in the person’s presence

to which we would like to add “under their direction on their behalf”.

Thank you.

[The Chair, Liberal, Anthony Housefather]

Thank you very much, Ms. Self.

I really appreciate the testimony offered by each of the different witnesses.

We're now going to move to questions. The Conservatives have the first six minutes. I'm going to pass it to Mr. Kmiec, who is going to ask the first questions.

[Tom Kmiec, Conservative, Calgary Shepard, AB]

I might share my time with my colleague Ted here.

Thank you very much to all the presenters.

My first question is going to be on the definition of medical practitioner. I want to get your thoughts on this.

My home province of Alberta has something called the Health Professions Act, and schedule 21 actually defines what a medical practitioner is. It covers, basically, everything from a generalist to things like osteopaths, so chiropractors. I want to get thoughts from each of you on this. Should two chiropractors be eligible to provide medical assistance in dying, say in a remote community or just in a private setting where they have a practice of their own? This is for each of you, and maybe we can start with Professor Bourassa.

[Prof. Carrie Bourassa]

I think particularly if you're thinking about a rural northern community, from my perspective when there's already a shortage of physicians, if they're a licensed physician and they're practising, then I think it would be important to allow them to, because we already have such a shortage.

I should have outlined the practical amendments I wanted made to the bill, I suppose, but one of the issues that is key for me is that there are not enough licensed physicians or nurse practitioners in northern and rural areas and certainly not on or near reserves.

I think if there's a licensed practitioner who is appropriately trained—and that's another key issue—then that is certainly worth consideration. I think training is particularly important. I don't think that just anybody with a licence is necessarily capable of signing off or advising on this. That's where I think training is really important.

[Margaret Birrell, Board Member, Alliance of People with Disabilities Who Are Supportive of Legal Assisted Dying Society]

You were talking about people being able to use chiropractors. I think we need to come to that decision on each individual case. If in fact the person's disability requires them to have a chiropractor, then chiropractors would be the most specific specialist the individual could use. I don't think practitioners should be removed without looking at what are the needs of the individual who is actually requiring some assistance.

[The Chair, Liberal, Anthony Housefather]

Did you also want to comment, Ms. Self?

[Hazel Self]

From our perspective, I believe it would be a physician who would have the authority to do that, but it does go back to training. Our issue, of course, is around communication. To us, physician-chiropractors are often lacking training in the communication needs of people with speech and language disabilities. We would see that as a key piece in the training.

[Tom Kmiec, Conservative, Calgary Shepard, AB]

I'm going to pick up on something that Professor Bourassa said.

Should one of the safeguards that we could add to this bill be that the attending physician, the medical practitioner responsible for ensuring that all the requirements are met, be required to understand the underlying condition the patient has, before being one of those who are allowed to sign off in documenting that the patient is eligible for medical assistance in dying? Should that training and knowledge be a requirement in the bill?

I'll go back to Professor Bourassa for an answer to that.

[Prof. Carrie Bourassa]

Yes, I absolutely think that, and I think the training needs to be broad and comprehensive.

My argument is that the physicians and nurse practitioners who are going to be involved actually need training in cultural safety, for example. I argued for that in the other parliamentary committee, and maybe I shouldn't be arguing it here, but I do think it's a key point. I think it's very important.

I know that others will argue for other training, and I won't step on toes, but I think there needs to be a certain array of training that needs to be checked off before they're eligible.

[The Chair, Liberal, Anthony Housefather]

Mr. Falk.

[Ted Falk, Conservative, Provencher, MB]

Professor Bourassa, I would like to make some observations on your comments.

One of the first comments you made in your intervention was that first nations communities are not prepared for this legislation. You went on to talk about the experiences of the residential school system, and about the oppression that your peoples are experiencing, which has led to depression and suicidal tendencies.

Attawapiskat has been much in the news in the last several weeks. It certainly is a tragedy and a crisis when there have been 105 suicide attempts in the last six months. I would think that legislation like this would send a confusing message to many indigenous communities. I would appreciate your comments on that.

Could you also say what we could do in this legislation that would help to address the concerns you have for your indigenous communities that might be receiving conflicting messages?

[Prof. Carrie Bourassa]

Thank you for your comments.

It is quite confusing. The reason I mentioned the suicides is exactly that. When we have incredible rates of suicide right now, it is the last thing people are thinking about when I talk to them about medically assisted dying, physician-assisted suicide. They are thinking about all the suicides they are trying to prevent in their communities, and it is a difficult topic to even think about in many cases.

Having said that, it is the case that we have extremely high chronic diseases and lots of palliative care issues. I have worked in palliative care for 10 years, and we see more and more young people in palliative care. We have a crisis on our hands.

It is very confusing. In terms of what can be done, there are a few things. I think the communication around medically assisted dying in communities is really important. One thing that I think is difficult for you to do—because the bill is already going through—is to open up those lines of communication with first nations communities around medically assisted dying: how it could be beneficial in communities, and what that might look like for different communities.

I think that sometimes first nations communities are brought in at the end of things, and that is frustrating for them because it is not a chance to really engage communities at that point. I think communication is one thing.

The other thing is that cultural safety training is real, and it is important. At this time, I think we are experiencing first nations people feeling unsafe in many respects, or else not having access to care.

This is a worry for me and for many people. If people are ever going to engage with this, understand what it is, if they were to access it, who is going to be engaging with them? Are they trained? Are they going to understand their communities? Are they going to be culturally competent and safe clinicians working with them? That is a real issue.

Also, think about investing in the communities themselves, about aboriginal navigators in communities where there are these exacerbated suicide rates.

I think those are some things that could be considered by the committee.

[The Chair, Liberal, Anthony Housefather]

Thank you very much.

We are now going to move to the Liberal side. Mr. Bittle, go ahead.

[Chris Bittle, Liberal, St. Catharines, ON]

Thank you.

Dr. Bourassa, as you understand, this committee is responding to a Supreme Court decision. Should legislation not be passed, medical assistance in dying becomes legal without a framework.

Do you have specific recommendations for amendments to this bill to address some of the concerns or any of the concerns that you mentioned?

[Prof. Carrie Bourassa]

I should have laid them out more clearly, I suppose.

As I just mentioned, number one on my top priority list would be to ensure that physicians and nurse practitioners who are going to be engaged in medically assisted dying receive appropriate training and—if I am so bold—mandatory training. This is a very sensitive issue. I don't know how well received it will be in many communities, if it will be well received at all.

Because it is, as you said, something that is inevitable, and there is going to be a framework, I think you have the ability to at least create some safety around it. That is really what we are talking about here, patient safety. In doing that, I think it is important to create a framework that allows for patient safety, and that is for sure a cultural safety training that I think should be required for physicians and clinicians.

I am also worried about the communication piece. I have wrestled with how you could come up with a communication dialogue piece for communities—because I think there is going to be a lot of confusion around this—and some clear and plain language so that communities understand what the implications of this are, and some engagement around this. I think the engagement piece could really happen, as I mentioned, through the support of aboriginal navigators. I don't know if that happens in partnership with the cultural safety training and with physicians, but I think it is important to support those ideas.

[Chris Bittle, Liberal, St. Catharines, ON]

Thank you so much.

I gauge from your comments as well that it's important to distinguish—and I believe the bill does this—between suicide, which is a public health issue that needs to be addressed, and medical assistance in dying, which is what we're addressing here.

My next question is for the Alliance of People with Disabilities. This may be an unfair question for the amount of time we have left. Could you take me through a brief section 7 analysis of advance directives and why you believe that absence is a violation of the charter?

[Angus Gunn]

Perhaps I'll field that one.

I think it's understood that in Carter “the right to life, liberty and security of the person” is engaged by legislation that would prohibit an individual's right to self-determine their own medical treatment and choices. The question would be not whether there's a breach of life, liberty, or security of the person, but rather whether it's being done “in accordance with the principles of fundamental justice”, which is the language at the end of section 7.

Again, in the Carter case, the court seemed to have little difficulty in concluding that the infringements that were considered in Carter were not done in accordance with the principles of fundamental justice. In my submission, the same conclusion would flow here.

The fact of the matter is that Carter was being decided in a factual context, and none of the plaintiffs in Carter were individuals who were trying to rely on advance directives, so obviously the court decided what it had to. That wasn't an issue before the court, but in my submission, the analysis that was used by the court in Carter applies with equal strength to a person in the situation of someone who is having to rely on an advance directive.

The only distinction, of course, is that the person relying on the directive is unable to, as it were, repeat the provision of consent at the time of the medically assisted death. That's the only factual difference, but in my submission, that does not give rise to any legal distinction that permits that case to be distinguished from the people who were under consideration in Carter.

[Chris Bittle, Liberal, St. Catharines, ON]

Colleagues around the table have mentioned that the absence of advance directives from the Carter decision poses a problem, in that Carter does not envision it. Do you see that as an issue going forward with the absence from the Carter decision in terms of your analysis under the charter?

[Angus Gunn]

Well, I don't think it can be said that Carter compels the extension of this opportunity to advance directives. I think the logic of Carter, however, compels that conclusion.

I think what you can be assured of is that if advance directives are not incorporated into this bill, there will be litigation over that issue. I think it's a given that either it will be put into the bill or its absence will be challenged. This is not an issue that I think will be left to the legislature ultimately. I think the courts will be asked to opine on this point if Bill C-14 remains silent on the point.

[The Chair, Liberal, Anthony Housefather]

Thank you very much.

Now we're going to move to Mr. Rankin for the NDP.

[Murray Rankin, NDP, Victoria, BC]

Ms. Sansoucy will ask our questions.

[The Chair, Liberal, Anthony Housefather]

Ms. Sansoucy, it is a great pleasure to welcome you to our committee.

[Brigitte Sansoucy, NDP, Saint-Hyacinthe—Bagot, QC]

Thank you, Mr. Chair.

I would like to thank the witnesses for their presentations.

Ms. Bourassa, I would like to ask you a question again that was asked earlier.

With my colleague, Murray Rankin, I had the privilege of sitting on the special joint committee. Some of our caucus colleagues who represent aboriginal communities are especially concerned. You have really given a clear description of the confusion they may feel because of the specific circumstances. I will ask you to be even clearer.

You talked about the amendments you would like to see made to the act. In terms of training, I will say that I would leave that to the provinces, because it is more their concern. However, when you talk about communication and navigators, I think you are talking more about the application of the law than about amendments to the bill that is before us.

Is the issue about ensuring that this law is a good fit with your communities? Should it instead be amended so that aboriginal communities are comfortable with it?